That day, the rain was splattering against the windshield. Yet nothing - not even some bound, black, heavy storm clouds - would darken or dampen our spirits. We were bringing mother home. We had spent Thanksgiving, Christmas, and New Year's in the hospital and finally, on January 4th, an ordinary Monday, we were going home.
Things were different, though, and we were different than we were three months earlier when mother was first diagnosed with a brain tumor. Had we known beforehand of the many difficulties we would face over those months, we would have doubted our ability to survive. But we had come through what can only be described as a "Red Sea" experience.
There are many crises we human beings face in a single lifetime, with a mere few being true "Red Sea" experiences. If you have ever been in a crisis that held no possibility of turning back to safe, comfortable ground and all forward decisions seem perilous, then you are no stranger to a "Red Sea" experience. You know what the terrified Israelites must have felt as they huddled in fear, wedged between the turbulent Red Sea and the charging, bloodthirsty Egyptian army. This article focuses not on the biblical interpretation of a "Red Sea" experience but rather on the feelings and emotions generated by the tight, psychological, insecure space of such a crisis.
At this retelling of my experience, my feelings and emotions are still close to the surface even though it has been two years since the incidents took place. However, a certain clarity and order have been achieved only now after time has distanced the experience. For the crisis was a time of fear and bewilderment; a time during which I frequently tried to skirt despair and all the while became even more deeply lost in it. Since no road maps existed through despair's rugged terrain, getting lost was an easy and frequent occurrence. My "Red Sea" experience began with the diagnosis. It began as a nightmare.
To refer to mother's diagnosis as a nightmare now seems an unfit and inadequate description for portraying the true meaning and magnitude of feelings that surfaced. Yet such terms are commonly used to convey the depth of emotional experiences, but only rarely are words capable of truly expressing them.
I am reminded of Franz Kafka, the twentieth-century author and existentialist, who spoke of yearning to write all his anxiety entirely out of him; writing it into the depth of the paper just as it came out of the depths of his being. Somehow writing is a catharsis, but few of us are as gifted as Kafka at transforming the blank page. However, some of us still try; must try.
MEDIAN SAGITTAL SECTION THROUGH THE BRAIN
What I remember most about mother's diagnosis was the stillness of the moment that followed learning of it. Wedged in a tiny, delicate space (cerebellopontine angle) within the brain sat a tumor, which was pressing against two of the brain's vital parts: the cerebellum, the part responsible for balance; and the pons, the breathing regulator (see Figure).
A brain tumor - the news stunned and numbed me. As I sat listening, my hands gripping the sides of my chair, I felt defenseless and weak; as though I would fall off if someone were only to tap me gently. Each additional bit of devastating news held me captive for the next assault. In the gripping moment of diagnosis, my world was shaken, my security violated, and my control taken away. There was nothing to hold onto, nowhere to turn. Time stopped. All worldly concerns ceased. The thought of losing my mother became paramount. The reality of the situation flowed through my veins and settled as a knot in my stomach.
My mind flashed back to my mother's visit three months previously to our family physician. She was concerned about her recent unsteadiness and increased frequency of headaches. At that time the physician patted her on the back and sent her home with an appointment card, which showed a date that was six months away. I had a similar memory of the experience she had had a year and a half earlier with an ENT (ear, nose, throat) specialist. Mother had gone to the specialist to check on a relatively sudden hearing loss she had noticed. She had audiological tests performed during the office visit, which confirmed a left-sided hearing deficit. That day she was sent home reassured that such findings were normal for someone 68 years old.
Why hadn't those physicians been able to recognize the symptoms of a brain tumor, especially the type mother had - an acoustic neuroma. Acoustic means hearing, and the first symptom of the tumor's presence is hearing loss with unsteadiness and headache as subsequent signs.
As I thought about these missed diagnoses, tears came. They were hot tears of anger. How could those doctors be so blind? Our space-age medicine has come such a long way since the days of leeching and bleeding, yet it remains only as good as the humans who use it.
Even when mother was finally referred to a neurologist, he thought she might only be experiencing migraine headaches but, "to be on the safe side, " wanted her to have a CAT scan. Usually an intravenous solution of contrast medium or dye is used to highlight the blood supply in each section. It was not used, however, in mother's case. Because she was asthmatic and was allergic to iodine, use of an iodinecontaining dye could have resulted in a severe, life-threatening reaction. Thus, the scan was performed without benefit of the dye.
What was readily apparent upon scanning was an accumulation of cerebrospinal fluid, which was dilating the chambers (ventricles) in the brain. Such a condition is commonly known as hydrocephalus (water on the brain).
The routine treatment proposed was to shunt the fluid from the brain to the abdomen. This required a four- hour surgical procedure. We hoped such an intervention would relieve the symptoms. Yet a troublesome question kept surfacing in my mind: "What was causing the fluid to accumulate?" Were arteriosclerotic or vascular changes constricting the route of flow? Such age-related changes do not usually produce sudden symptoms, but appear gradually over a period of years. Bsrhaps the hydrocephalus resulted from a brain abscess? But there were no signs of infection. Or was the obstructive force a tumor? If so, what kind - benign or cancerous? Could they, would they, operate?
When I asked the neurologist these questions, he simply said, "Just trust me. Let me make the decisions. Have faith." Although trust and faith were necessary, especially in higher powers, control over decision making needed to be a joint effort with the physician. I suppose physicians often feel that families cannot understand what is happening, so why tell them. If they do not understand, they will not worry. But ignorance only makes us feel powerless. Families need to make informed decisions.
The irony of my situation was that I was a professional nurse and knew I could formulate the questions more quickly and clearly than a lay person, yet I still did not receive the answers. There were moments when I desperately, though foolishly, wished to exchange my nurse's cap for a magician's wand and, with a deft sleight-ofhand, change the diagnosis and heal the hurt. Realizing the futility of such a fantasy did not diminish my need to do something, for the boundaries of my nursing role were far overshadowed by the obligations of my daughter role. Actions I might normally cajole other patients into accepting, now prompted fear and doubt and hesitation, such as the decision to allow the surgical implantation of the shunt. Surgery of any kind is a rude, invasive intrusion into the body's inner sanctuary. When the surgeon makes his incision, he lays open the matter of life and death. A nurse never wants to lose a patient, but such a proposition is doubly intolerable when the patient is your mother.
Mother tended to ask tougher questions than most patients, or maybe I just listened and heard them in a new way. "Will I still be me after the surgery? Will my basic thinking and feeling, the 'me-ness' of me, be cut away?" Mother's concern was surely justified, but I could not reassure her with any degree of certainty. The brain, the citadel of our being, houses essential individuality and humanness. It was at perplexing times like this, when faced with thorny questions, that I would slip back into feelings of powerlessness and isolation, emotions born of childish despair.
I often felt like the little, three-yearold girl in one of my favorite stories who was being put to bed by her father and mother. The little girl was doing everything she could to prolong the conversation with her parents. Recognizing this tactic, the mother said, "It's time for you to go to sleep. Your father and I are going to put out the light after we kiss you good night." The little girl responded with the protest, "But I'm afraid of the dark. " Her mother, whose patience was being tried, replied, "There is nothing to be afraid of. God is here with you. " The little girl looked up at her mother and father and said, "I know that God is here, but I want someone in here with skin on."
At times of illness, when we do not get the answers we seek, a second opinion proves to be just what we need. It proved so in mother's case.
Consultation with a second neurologist resulted in a repeat CAT scan and immediate hospitalization. Dye was used for the second CAT scan and mother had to be premedicated with large doses of an antihistamine and a steroid to counteract any allergic reaction. This time the scan confirmed the presence of hydrocephalus and, unlike the first scan, clarified the cause as a medium-sized, egg-shaped tumor. Judging from its position - so near the left inner ear canal - the neurologist suspected a benign acoustic neuroma.
Wim my adrenalin flowing fast, and with what little time I had, I plunged into educating myself about acoustic tumors. I devoured every article, every neurology textbook I could find that offered any glimpse of additional data on the nature of such tumors. There was surprisingly little in the literature on a tumor that comprises 5% to 10% of all intracranial neoplasms.
What I did learn was that an acoustic neuroma is a slow-growing (one to ten years), encapsulated tumor arising from the Schwann cells on the sheath of the acoustic (8th) nerve close to where the nerve attaches to the brain stem. As it grows, it frequently exerts pressure on the pons, cerebellum, and fourth ventricle. Any and all of the cranial nerves within the area may become intertwined and compressed, thereby producing the characteristic focal symptoms.
The clinical course of an acoustic neuroma has been classified anatomically into four stages. The first stage is involvement of the acoustic nerve (8th cranial nerve), which is sensory only and consists of two branches. The cochlear division is for hearing; the vestibular branch is for equilibrium.
As the tumor grows, it displaces more of the cranial nerves. In this stage (Stage 2), mother demonstrated dysfunction of the glossopharyngeal (9th) nerve. She was experiencing an odd, fleeting sensation of numbness and burning in her tongue and a diminished sense of taste. The glossopharyngeal controls taste on the posterior third of the tongue and sensation on the back of the tongue.
Six months later, the trigeminal (5th) nerve began to manifest both sensory and motor disturbance. Of the three sensory branches - ophthalmic, maxillary, and mandibular - it was the latter that exhibited the most dysfunction. Mother's lower jaw, lips, and chin on the left side had decreased sensation with occasional tingling and numbness. There was also reduced motor function evidenced by diminished mastication strength.
Stage 3 is marked by further disruption of the cranial nerves and compression of the brain stem. Three months prior to diagnosis, mother experienced a slight, left-sided facial weakness with a minimal ptosis. The facial (7th) nerve, chief motor nerve of the face, was responsible for this cosmetic change as it became more and more intertwined with the tumor. This nerve is also responsible for the perception of taste on the anterior two thirds of the tongue, effecting an appetite change. Mother began eating less because she savored food less.
About this same time, cerebellar disturbance became manifest. Mother noticed that her balance was unsteady and that she tended to deviate to the left. She compensated by using a short-step gait, which eventuated in a wide-based shuffle.
Stage 4 manifests itself in increased intracranial pressure and hydrocephalic crisis. Normally, the four ventricles are filled with approximately 135 cc of clear, watery cerebrospinal fluid. Most of the pint of fluid that is produced daily comes from the choroid plexuses, which are tufts of dilated capillaries that project into the ventricular walls. The fluid is then absorbed in the subarachnoid space by cerebral veins.
Distention of the cerebral ventricles usually results from an obstruction somewhere along the pathway of the cerebrospinal fluid circulation, a condition referred to as hydrocephalus. In the adult, since the cranial sutures have closed, there is no increase in head size. In most cases, regardless of the cause of hydrocephalus, the cerebrospinal fluid pressure is elevated (200 to 600 mm).
Armed with information and vital statistics I felt somewhat more calm, even though my worst fears had been confirmed. I also realized that something beyond information was needed, something even more vital: love and caring. I knew instinctively that I was touching the core of all healing and helping. I knew if I could do nothing else and control nothing else, I had a choice and found strength in love and caring. I made every effort to underscore any and all manifestations of that love and caring.
Visits, calls, and gifts from friends and relatives were maypoles around which I would rally to celebrate the lifegiving, caring bond between us and the rest of the world. Such connections provided both fleeting escapes from the sick to the healthy world and nourishment necessary for survival. For example, on the occasion of Thanksgiving day a friend brought into Mother's hospital room a home-cooked dinner with all the trimmings, including cranberry jelly and gravy. While other people celebrated Thanksgiving around a traditional, turkey-set table, my family gathered around Mother's hospital bed, giving prayerful thanks for her life and for friends, who were such good medicine. Illness is not without its beneficial fruits, which helped my family and me feel less imprisoned by the tumor.
We had other positive experiences during Mother's hospitalization period, but none created a more lasting impression than those shared with the other patients on the neurosurgical unit. Although we were never formally introduced, we could not have felt a stronger bond with them. There was a shared psychic territory of confirming experience, a unity in suffering but, more important, a joy in living to whatever degree possible. It was not illness per se that provided the joy, but the fruits of illness that occasioned it.
Mother's tumor was removed on December 22nd, a month after the shunting procedure. I will never forget anxiously awaiting her return to the recovery room after the tedious, 11-hour operation.· The recovery room signaled the end of a long waiting period. Mother had come through the operation.
The recovery room meant a stopover place, where no one is supposed to stay. This is where life pauses, unable for the moment to sustain itself unaided. Life sighs, moans, groans, and bleeps in recognition of the horrendous assault it has survived, and then continues on somewhere else. In Mother's case the "somewhere else" was back to her room on the neurology unit for two more weeks and then home.
IfI were to describe those two weeks as simple and uneventful, I would be misleading you. But what took place during those weeks was far less significant than the day we brought mother home. I continue to try to recognize and encompass the full meaning of that day. I will always be able to draw something from that day, but right now the lesson seems to be that there is hope in any extreme circumstances of parting even the roughest waters of a "Red Sea" experience.
- Carini E, Owens G: Neurological and Neurosurgical Nursing. St Louis, CV Mosby Co, 1974.
- Chai W: Total excision of acoustic neurinomas with special reference to preservation of facial nerve function. Chin Med J 1979; 92:327-336.
- Clark R: Clinical Neuroanatomy and Neurophysiology. Philadelphia, FA Davis Co, 1976.
- House W, Luetje C (eds): Acoustic Tumors, Voll: Diagnosis, Vol II: Management. Baltimore, University Park Press, 1979.
- Jacobs L, Kinkel W: Computerized axial transverse tomography in normal pressure hydrocephalus. Neurology 1976; 26(June):501507.
- Ojemann R, Montgomery W, Weiss A, et al: Evaluation and surgical treatment of acoustic neuroma. N Eng J Med 1972; 287:895.
- Pool J: Acoustic Nerve Tumors: Early Diagnosis and Treatment. Springfield, 111, Charles C. Thomas, 1970.
- Samuels M: Manual cf Neurologie Therapeutics with Essential Diagnosis. Boston, Little Brown and Co, 1978.
- Swift N, Mabel R: Manual of Neurological Nursing. Boston; Little Brown and Co, 1978.
- An international support and educational organization is available to patients and their families in the Acoustic Neuroma Association. The Acoustic Neuroma Association is a patientorganized and -supported, self-help association for acoustic and other benign nerve tumors. It publishes a quarterly newsletter and a booklet on acoustic neuroma, and conducts an annual symposium for patients and families. It also promotes local support networks. For more information, contact the Acoustic Neuroma Association at PO Box 398, Carlisle, PA 17013.